-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi Tree,
I agree entirely with your "Too Many Cooks" post.
In this case, I'm not looking to switch horses, only that Dr. S. has suggested that I need a neurologist, because my neuro symptoms are so prevalent.
I heard that Dr. Y. is a specialist in autonomic function disorder, and I have mainly this.
It's a consult I'm looking for, with (hopefully) some very specific targeting of drugs for symptom management, until the Lyme subsides.
Best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I think that Bea Seiberts Husband had an appoinment with him this week. I am looking for her post as to how it went too.
Posts: 3975 | From usa | Registered: Aug 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Go meet him this Saturday and find out what he is like!!! He & Doc B are co-moderating the Greater NY Support Group- you lucky people!!!The following is is from the web page
Doc Y has his PHONE NUMBER listed on site for any Lyme patient to call for more info!!!
So he's a God, basically*)!)!! A Neurologist listing his PHONE NUMBER!!! ************************************************* The next Meeting of
The Greater New York Lyme Neuroborreliosis Support Group
is on December 8, 2007 12:30 - 2:00 pm
Moderated by: Dr. Joseph Burrascano, Founding board member of the International Lyme and Associated Diseases Society. and Dr. David S. Younger, Chief, Neuromuscular Diseases, NYU medical Center.
The Greater New York Lyme Neuroborreliosis Support Group Meets the 2nd Sturday every other month At 12:30 pm - 2:00 pm 2007: 12/8 2008: 2/9, 4/12, and 6/14
at New York University Medical Center Rusk Institute, Horizon House - Ground Fl. 400 E.34th Street New York, NY 10016
Lunch will be served.
Rusk Institute is handicapped-accessible with parking near the entrance on 34th St.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
I have an appt. next week; I'll let you all know how it goes.
Maybe I can move my flight and make the meeting...
xxoo
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
I have been to see Dr. Y. He's a wonderful man and very hard working and helpful.
Dr. K, llmd neuro sent me to Dr. K after my insurance co denied me IVIG for 18 months and I was dying.
Dr. Y did an EMG, agreed with Dr. K's dx and I finally got IVIG.
Been infusing i day/ week since the end of May and also using colloidal silver instead of abx, and contiunously improving.
Posts: 663 | From NH USA | Registered: Sep 2004
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posted
If you have $6000 - $10,000 to pay for testing out of pocket (does not accept insurance) then good luck.
Otherwise, don't waste the time and energy.
One of the biggest disappointments hubby has had to date. Hubby is still in the hospital at Lenox Hill in Manhattan. Can't go into too many details as Dr Y is the admitting doc.
Let's just say that we have more confidence in the psych doc on the case than in the neurologist.
A friendly rmeminder that many docs have a hidden agenda and there are many wolves in sheep's clothing.
If you believe IV IgG is a cure-all and can pay for the testing more power to you. The inside scoop is that the neuro wrote some of the insurance company guidelines for use of IV IgG so he should know how to get the treatment approved.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
I have seen Dr. Y in NYC. Yes, very expensive, and I only got there because I wrote a medical arts grant. Based on need and my artwork's technical strength, I was awarded the grant.
He ran many,many tests. I did qualify for the IVIG, but he is difficult to contact when you are out of state. My pcp was frustrated because he didn't know how to run the IVIG.
Luckily, there was a new hematologist/oncologist at our local hospital that agreed to take my case. She runs the gamma and she is covered by my insurance. (One more thing, Dr. Y has a very aggressive dosage, and if one has a sensitive body, it will be excruciating.) My hematologist and I figured out the best way to dose based upon my particular body.
The other thing with Dr. Y is that you have to retest after so many doses, so another $7,000 up front. I know he is doing research, but I couldn't afford to do that. That being said, I am truly grateful for getting the IVIG. He is a compassionate doctor, just busy, and therefore, difficult communication.
If you can get the IVIG locally, I would try for it at home.
[ 07. February 2008, 08:33 AM: Message edited by: ArtistDi ]
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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posted
So basically the only treatment he offers, if you qualify is IVIG? It does not help all lymies, but does help some.
Posts: 8430 | From Not available | Registered: Oct 2000
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ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
I don't know if he offers more than IVIG. I think lymies with autoimmune issues do well with it. I am one of those, and therefore, have responded. I think those with the biggest neuro issues might benefit.
But, I am merely a patient, not a doctor.
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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posted
I'm not sure how anyone could think that Dr. Y is compassionate. He has been completely disrespectful to me and my father. He answers phone calls while I am in the office, but I can never reach him by phone...hmmm. And these are not emergency calls. He has lied to patients, he charges way too much for testing, and he uses stupid analogies that don't make any sense. My insurance company and I have spent over $60,000 on IVIG, seen zero results so far. He comes off as a jerk to me to be quite honest. He is also a one-trick pony. He thinks IVIG will cure anything. Then when it doesnt, he is rich and we are still suffering. Oh well, too bad for us.
Posts: 10 | From Madison, CT | Registered: May 2008
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I just completed 15 ivigs through dr. Y in the course of 3 months.
I had a bad impression of him right from the beginning but he was pushing the IVIG as a cure all for my neuropathy.
He is very short and curt when you do reach him on the phone.
He is full of himself and I am not giving him anymore of my money.
15 IVIGS were not fun to go through. I should have been attacking my Lyme more aggressively during that time.
Posts: 256 | From long island, new york | Registered: Feb 2008
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posted
IVIG is not a cure all, but the last hope for a lot of people with really bad neuro symptoms, especially neuropathy - since this is one of the symptoms that often doesn't resolve with abx. So I don't see what is wrong with him pushing IVIG, since there really isn't anything else out there except steroids.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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posted
the problem is that he is a jerk. He talks to me like I'm a child who has no clue. He answers random phone calls when my father and I are in his office. It took him a month and a half to sign his name on my SS papers, after he twice told me he would have to charge me for doing just that. He has put my treatment on hold because he has a gripe with my nursing company over a stupid signature. Now I cant get my treatment at all because my insurance only uses that nursing company. He thinks he is a god, but really he's a one-trick pony hack. Not to mention other horror stories Ive heard about this reckless incompetent fool.
Posts: 10 | From Madison, CT | Registered: May 2008
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posted
I can't speak to the Dr. Y issue but I will say that IVIG has really helped my husband. He has an autoimmune presentation and had severe muscle pain and wasting. Dr. Y isn't the only doctor who can get IVIG authorized by insurance.
Posts: 984 | From San Diego | Registered: Nov 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It's unfortunate to see another LLMD with such a negative record. I had him on my list, and still do, but it's filled with negative complaints.
I have a friend who sees him, she was singing his praises the last time I heard from her, but then again she was also dying from countless infections/coinfections and Lyme, weighed 82lbs and has lost complete function of her entire G.I. system and is allergic to every single antibiotic.
At any rate, if anyone has positive reports, please PM me. I try to keep it balanced! Hopefully someone has something nice to say.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I had a doc who sugessted IVIG. But I've always been skeptical how the blood could filter out lyme bacteria, co-infections, and other critters that couldn't be found it in my own blood work in the begining.
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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bettyg
Unregistered
posted
.. BUGG, please clean out your PM box; it's full!! ***********************************************
thanks for the compliments.
question: did your reply mean...I apologize and will break up my solid block text
OR did it mean, sorry, no, i won't break it UP ?? thx my attorney friend!
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